Schuyler is my weird and wonderful monster-slayer. Together we have many adventures.

May 8, 2013

No Heroic Measures

Hero. It's a word that gets thrown around rather freely, particularly in the disability community. You read about hero teachers who change the world for a kid. You read endless stories and remarks about hero parents who do things that other parents say they could never do. (This is bullshit, by the way. No one is ready to do what special needs parents must do. You learn how, usually through screwing up dramatically, you figure it out, and you do so in a hurry because who else is going to do it? You figure it out and become a "hero", or you put a hose in the tailpipe of your car in the garage and you give up. Most of us heroes choose the first option, for some reason. Well, that's what makes us so heroic, right?) You read about heroes in the community who do heroic things like daring to treat someone with a disability like a human being who has intrinsic value.

We seem to have set a pretty low bar for heroes.

I think perhaps the most troubling use of that term is also the one that is the easiest to embrace. The heroes aren't those of us who care for kids with disabilities. At best we are sidekicks, or the eccentric scientist who creates crazy cool tools for Bruce Wayne. But he's still the guy who has to take those tools and go be Batman. If anyone is a hero, it's the child with a disability who steps up and perseveres and overcomes obstacles, right?

Except it's not that simple. It's not that heartwarming, and while it might make for a sweet story on the Today Show, you can decide for yourself if one more piece of inspiration candy ultimately represents a positive step forward.

Kids like Schuyler aren't heroic. They aren't "differently abled" (unless they can fly or shoot lasers out of their eyes). They aren't here to teach us how to be better people or to show us the way to God, although they most certainly do both those things. Schuyler wasn't born to turn me from an asshole to, well, perhaps somewhat less of an asshole. Her existence isn't predicated on her ability to inspire others. She does these things, but she does so largely without trying, and without any responsibility or expectation.

Schuyler doesn't want to be a hero. She wants to be a Schuyler.

Kids like Schuyler ultimately forge their life's path for themselves, either with the help of good people or despite the machinations of bad ones. That effort can look heroic. It can require years of patience, and feats of herculean personal strength. Able bodied people can look at that effort, and we can see heroes. But it's important to remember that when we do this, we are unintentionally making a statement, to ourselves and to the world and to our kids.

We are setting them apart. We are identifying them as different, and even if in our eyes that difference is a good thing ("heroes!") rather than a thing of pity ("people who are less"), it's still an isolating difference. Kids like Schuyler face the fact that they are different every day of their lives. Some of them simply feel different; others feel broken. And the hard truth is that both of those things are probably true.

Kids with disabilities aren't engaging in heroics. They are engaging in life, striving for the things that make us all human, even if they are different, even if they are impaired, and even if they are broken. When we fetishize that work, when we elevate their daily struggles into heroics, we miss the opportunity to give them places at the table. We give adulation when the most valuable thing we can offer instead is authentic relationships.

Superman is a hero, but does he have any friends? He's a superhero, even, but can he have those authentic friendships if he's not perceived as human? (He has his "Super Friends", true. But it's important to note that they, too, are superheroes. Outsiders. Heroes set apart.)

Does that loaded word, "hero", accomplish anything positive, or are we better off without it altogether?

Now, having said all that, I must confess something, a weakness stemming from fatherhood and perhaps from overbelief. I recognize the folly of the hero concept, but I don't always push it as far away as I should. I know better, but the honest truth is that sometimes Schuyler can feel a little like a hero to me. That's not just because she was given a brain that is literally about three quarters broken and yet she's ambulatory and smart and funny as hell and a swell percussionist and a natural poet. She didn't decide to make that busted brain work despite itself. That was just one of those inexplicable miracles of science.

Sometimes, though.

Sometimes I watch how she navigates the crap hand she was dealt, and it doesn't look all that bad to me, not the way she does it. Not all the time, or honestly even most of the time, but in those Chumbawamba moments when she gets knocked down and she gets up again. I don't always see how she does it, and I wish I had those deep wells from which she draws, the ones that power her through the hard spots, which are many. I feel that way even when I realize, very occasionally, that perhaps I do possess those deep wells after all.

Schuyler isn't a hero, and she shouldn't be lauded as one, lauded and separated and ever so slightly dehumanized. She's not differently abled, she isn't a special little angel of God, and she's not doing things that any other kid wouldn't try to do if placed in a similar situation.

She's not a hero, but she is a remarkable human being. If I absolutely required the services of a hero, I suppose she would do in a pinch.

5 comments:

Thank you so much for writing this. I've been trying to convey this feeling to others for a while now and you have explained it perfectly. People are people, no matter what. They may have handicaps, they may not, but in the end all we try to achieve is live our lives as best as we can. That doesn't make any of us heroes. It makes us humans.

I feel torn about some concepts also concerning the "hero" status. For example, much as we love participating in the Buddy Walk for our children with Down syndrome, I sometimes wonder if it really raises awareness or if it further separates them into a stereotyped existence. I struggle to balance it all in my mind. Maybe someday...

they are resilient and determined and trying desperately to find a place and make their way in a world not designed for them. As parents, we fight like hell to make this happen because we love them so fiercely. You are right, this does not make us heroes. I have a child Schulyer's age with a disability. I see so many parallels between our experiences and yours and many of the emotions you experience strike a chord with me. I follow your blog regularly, it lets me know - that we are not the only ones on this journey.

I don't know if I agree completely with this "She's not differently abled, she isn't a special little angel of God, and she's not doing things that any other kid wouldn't try to do if placed in a similar situation."

I don't think she's a special little angel of god nor do I think she's differently able. I actually think those terms are outright laughable when you're a human who's struggling against your own body.

I do think that Schuyler is special, though and that handed the same crap deck of cards, many humans (including adults) fold. I've seen it with my own struggles against chronic illness and the people who share that road with me. Some of us carry the pack of crap and understand that it might require us to walk life's road in a slightly altered way, some of us pay attention and try to do things with as much compassion, empathy, and strength as we can muster. Some people put the pack down and wallow, never moving. Some people let the demons in the bag eat them alive, often complaining about their evil as they stand their getting devoured.

Our capacity to handle the disease isn't defined by the disease - in other words - we don't get handed a badge of courage with challenges. We've got to find that courage to take things as they come with grace elsewhere - and sometimes - including in Schuyler's case - we do.

Thank you for this post. I appreciate your honesty as a parent.I have referenced your book and blog to countless parents and teachers. This post sums up my conflicted thoughts exactly. As a teacher I tend to get the quirkier kids ( with and without special needs.) Honestly, my kids are just being themselves. Yes, remarkable things happen in my classroom, but it is all because we are going about the business of being ourselves. I teach hard, they work hard. We are just doing our jobs.